JOCEYLN MCLEAN UNIVERSITY OF SYDNEY JULY 2002

Transcription

1 RECOVERY FOLLOWING PNEUMONECTOMY: PATIENTS INITIAL 2 YEAR EXPERIENCE JOCEYLN MCLEAN UNIVERSITY OF SYDNEY JULY 2002 A thesis submitted to the Faculty of Nursing, School of Clinical Nursing to fulfill the requirement for a Masters of Nursing (Research).

2 TABLE OF CONTENTS ACKNOWLEDGEMENTS ABSTRACT KEY TO THE TEXT CHAPTER 1 INTRODUCTION 1.1 Background to the study Purpose of the study Organisation of the thesis Background Information Lung cancer Smoking Historical background: lung surgery, smoking and pneumonectomy 10 CHAPTER 2 LITERATURE REVIEW 2.1 Introduction Treatment Recovery Literature searches and review Personal experiences of surgery and recovering after pneumonectomy Nursing publications related to surgery and recovery after pneumonectomy Medical literature related to surgery and recovery after pneumonectomy Other literature related to lung cancer surgery and recovery Conclusion 27 CHAPTER 3 METHODOLOGY 3.1 Introduction Philosophical Underpinning Phenomenology Obtaining information rich data How the study was conducted: the methodology Data analysis Rigor and validation Ethical considerations Methodological issues Conclusion 47 ii

3 CHAPTER 4 SECTION 1 LIVING THE DISCOMFORTS OF TREATMENT AND RECOVERY Introduction Discomfort Post-operative pain Pain Management and patient experiences of pain Acute pericarditis Fear of drug addiction, physical dependence, and tolerance Other pain experiences Fluid in the pneumonectomy space Epigastric symptoms Constipation Hospital experience Concluding comment 77 CHAPTER 4 SECTION 2 DISCOVERING NEW LIMITATIONS ON MY SELF: FUNCTIONAL AND EMOTIONAL Introduction Limitations Participant experiences Shortness of breath Lifting Social, leisure, and pleasure activities Activities of daily living Sport and fitness Emotional impact of physical limitations Disability Sexuality Quality of life The overall impact of limitations on recovery Conclusion 99 CHAPTER 4 SECTION 3 MY RELIANCE ON SUPPORT Introduction Coping, suffering, and enduring Family and friends support Professional support Nursing support Support groups Conclusion 117 iii

4 CHAPTER 4 SECTION 4 MY FINANCIAL SECURITY IS THREATENED Introduction Experiences of returning to work 119 Category 1: Light work 121 Category 2: Heavy physical work with an option to alter work practices 122 Category 3: Heavy demanding work, no option to return to the same work Return to work and power Conclusion 131 CHAPTER 4 SECTION 5 MY SURVIVAL IS AT THREAT Introduction Surviving cancer: surviving lung cancer Participants experiences Literature about surviving lung cancer Conclusion 147 CHAPTER 4 SECTION 6 I WISH I HAD KNOWN MORE Introduction Information Information and decision making Information making sense Conclusion 157 CHAPTER 5 SUMMARY, CONCLUSION AND RECOMMENDATIONS 5.1 Summary of the study Summary of the findings Limitations of the study Implications for patient care Implications for clinical practice: in nursing and other fields Implications for patient and nursing education Implications for research: in nursing and other fields Conclusion 165 REFERENCES iv

5 APPENDIXES Appendix A Appendix B Appendix C Appendix D Appendix E Appendix F Appendix G Information for Participants Interview questions Participant consent form Letter to local Medical Officer Letter of introduction to potential participants The revised American Joint Committee for Cancer Staging Letter to participants re themes and content v

6 ACKNOWLEDGEMENTS I discovered while conducting this research that research involves not only entering the lives of the people you are studying, but also entering your own life in terms of the discipline and focus that one needs in order to complete this type of work. I found this study to be an arduous yet inspiring task and it involved the lives of many people that I wish to recognise. This study could not have been completed without the valuable assistance from my Supervisor, Dr. Jennifer Blundell. Jenni quietly guided me in the right direction when I needed it, and she provided me with timely encouragement and support. I thank my dear children and very special friends for encouraging me throughout the study, and for patiently waiting for me to complete this study. My sincere thanks also go to my colleagues in the cardiothoracic department who provided me with endless encouragement and motivation. To Ruth, thank you for helping me with the editing of the final draft: you were a gift from God. To the surgeons with whom I work closely, I thank you for providing me with the opportunity to conduct the study, the incentive to go after my professional goal, and a professional environment that was conducive to me achieving my goal. I dedicate this study to my late mum and dad who had the insight to send me nursing so that I could help other people, and to my late friends Chris and Judy who died of lung cancer while the study was being conducted. While I was struggling with the study, I came across this quote in a research text. It gave me much solace: Do not be afraid to seize whatever you have written and cut it to ribbons; it can always be restored to its original condition in the morning, if that seems the best. Remember, it is no sign of weakness or defeat that your manuscript ends up in need of major surgery. This is a common occurrence in all writing, and among the best writers (Strunk and White 1972, 72 cited in Dane, 1990, 211). vi

7 ABSTRACT RECOVERY FOLLOWING PNEUMONECTOMY: PATIENTS INITIAL 2-YEAR EXPERIENCE. Little is known about the recovery of patients after pneumonectomy and the impact of the surgery on the lifestyle of young, employed, ex-smokers and their families. This study was conducted to address this knowledge deficit, and gather information that would help health professionals to be able to assist people facing pneumonectomy. A qualitative study using van Manens methodological approach to interpretive phenomenology was chosen, in order to capture a full and rich understanding and meaning of the phenomenon that patients live. The names, age, operation, histological cell type, stage of disease, and disease free status of potential participants were obtained from a Lung Cancer Surgical Database after obtaining ethical approval for the study. Nine participants (three females and six males) met the inclusion criteria and gave informed consent for the study. Data collection comprised of open-ended interviews that were audiotaped, then transcribed verbatim into hard data. Data interpretation was based on the selective reading approach of van Manen from which six thematic statements arose. These are living the discomforts of treatment and recovery, discovering new limitations on myself; functional and emotional, my reliance on support, my financial security is threatened, my survival is at threat, and I wish I had known more. The study found that each participant had a unique experience of recovery and consequently the degree of recovery attained varied between participants. They all had a very strong desire to survive lung cancer and considered the risks of major surgery and loosing a lung to be insignificant compared to the certainty of loosing their life if they did not undergo surgery. This study provided a glimpse of what it was like for a group of patients to live the experience of life after a pneumonectomy and it provides a basis from which nurses can explore further the experiences of patients who are subjected to lung cancer surgery. vii

8 KEY TO THE TEXT An essential component of this study was the information contained in the transcripts of the interviews that participants gave. Sections of these transcripts have been quoted in this thesis to enrich the meaning of the themes. Some editing of the spoken word has been necessary so that the written word would be more comprehensible. Some words have been left out, while others have been inserted, but the original meaning of the dialogue has been retained. Alterations within the text have been symbolised as follows: An ellipse indicates that text has been deleted by the researcher to edit out irrelevant material. [words within quotes] Square brackets around normal text indicate words that have been inserted to so that the reader can appreciate the body language/mood of the participant during that section of the interview. [words within quotes] Square brackets around italicised text indicate words that the researcher inserted to assist the reader to comprehend the interview dialogue. Italics Italics indicate that a direct quote from the transcript has been used. Single spaced normal text Singled spaced, normal text within single quotation marks indicate a direct quote from the literature. viii

9 CHAPTER 1 INTRODUCTION 1.1 Background to the study The ability to breathe easily and without thought while carrying out all the activities inherent in daily living is taken for granted by most people. The surgical removal of one lung, called pneumonectomy, is a common operation performed as the treatment for lung cancer. From January 1984 to July 2001, cardiothoracic surgeons practising in a cardiothoracic service within one New South Wales Area Health Service performed surgical resections for primary lung cancer on 2,495 people of whom 557, or 23%, had a pneumonectomy (Data from the Lung Cancer Surgical Database, University of Sydney, NSW). Therefore, a significant number of people have the potential for their activities of daily living to be altered because of this operation. My involvement with patients having a pneumonectomy began when I was appointed to the position of Case Manager for Thoracic Surgery. In this role, I guide and support patients and families through an entire continuum of care, and I have my first contact with them very soon after their first knowing that an operation is recommended. The patient, their family, and I usually meet face to face in the cardiothoracic surgeon s consulting room (or over the telephone) and discuss together the expected course of their treatment, care, and recovery from the surgery. Verbal information is supported with written information in the form of a patient information booklet. The patient is guided through the required pre-admission processing, then, once admitted to hospital my daily visits support them through their surgery and hospital stay. Prior to their discharge from hospital, the patient, their relatives, and I discuss their ongoing care and likely course of recovery. I review their progress after discharge from hospital and trouble shoot with them via a follow up telephone call. This contact provides important ongoing clinical and emotional support to the patient and family after their discharge from hospital. Referrals to local support networks and services are made where appropriate as a result of this communication. Two-way communication between the case manager and patient begins at our first meeting and continues for as long as the patient feels the need for it. It was through these 1

10 communications that I began to hear from patients that the process of recovery after pneumonectomy was often quite difficult. Patients told me about the challenges they encountered during their recovery, and this led to my interest in this study. I found that while I was able to talk about the clinical issues that might impact on their physical activities of daily living, such as how the body coped with a reduced respiratory capacity during physical exercise, I did not have definitive answers to questions about personal and lifestyle issues. Patients wanted to know if they could live a good life with only one lung. They asked questions about how the surgery would affect their breathing. They asked, Will I be able to play tennis again? When can I go back to work? While lung cancer is more frequently a disease of an older population, young people also experience it. I remember clearly a 35-year old mother being prepared for surgery. One of her concerns was about whether she would be able to return to work as she and her husband had recently taken out a mortgage to purchase a new home. I realised that in order to begin to answer the many questions that patients had about living with one lung, I needed more information, but the information was not in textbooks, research articles, or professional journals. The answers therefore, could only come from those who had lived through the personal experience of pneumonectomy and were thereafter living life with their one remaining lung. The impetus to explore this topic grew from several aspects of my clinical practice. There was a pragmatic professional need to learn more about the specific issues experienced by people living with one lung, and a wish to provide information that would improve patient outcomes. There was also a personal desire to be more helpful to the patients that I care for in my role of nurse case manager. It appeared to me also, that there must be ways in which nurses working in the acute care area could assist in reducing some of the fears and anxieties that patients have when faced with this operation and the prospect of living life with one lung. Benner (1984), in writing about the helping role of nurses, pointed out that patients look to nurses for different kinds of help than they might ask of other professionals. This reminder, and the fact that patients do frequently ask for information and help at any time along their surgical care continuum, reinforced the need for the study. A search of all literature sources 2

11 at this stage revealed three publications related specifically to pneumonectomy. One was a personal report by a patient on the experience of losing a lung (Key, 1985). The other two were nursing articles addressing the immediate post-operative care of the patient following surgery (Burkhart, 1983; Brenner and Addona, 1995). Medical publications were plentiful but addressed issues specific to the procedure, morbidity and mortality, and quantitative measures of outcomes of the surgery. Patient concerns were not addressed in the medical literature. Given the absence of published information on recovery after pneumonectomy, there was little doubt that the best way to gain that information was to go to the people who lived the recovery and talk with them about their experiences. To facilitate this process a qualitative research method with a phenomenological philosophical basis was chosen for this study. Phenomenology would provide a fuller understanding through description, reflection and direct awareness (Wilkes 1991, 232) of the meaning of the phenomenon that these patients were living. In particular, this study focused on the approach of Max van Manen (1990) who believes that Phenomenology asks, What is this or that kind of experience like? (9). 1.2 Purpose of the study The purpose of the study was to explore the impact of pneumonectomy on the lives of patients and their families during their initial two years following surgery. To be more specific, the study would explore how the surgery affected the physical, social and lifestyle activities of previously healthy employed normal family people who underwent pneumonectomy, as opposed to older retired persons having this operation. It is expected that the analysis and interpretation of their experiences will provide valuable insight into the experience of recovery after pneumonectomy. Describing the phenomena will provide information for health professionals to use when they prepare patients for surgery and assist them in their recovery. The study was seen as having importance for nursing knowledge and practice, patient knowledge and medical knowledge. Therefore, it was seen as having three major aims: to 3

12 improve patient care and potential outcomes following pneumonectomy, to contribute to the body of nursing and medical knowledge, and to strengthen nursing practice. This study will contribute to the current limited knowledge base of what it is like experience and recover from pneumonectomy and live with one lung. It will help to close the gap between what patients know and feel and experience on a daily basis and what professionals have perceived they experience over a period of time called recovery. It is intended that the information gained from this study will assist patients facing this major surgery to feel more at ease, prepared and informed about the life they will have in front of them. 1.3 Organisation of the thesis Chapter 1 introduces the background and rationale for the choice of the study topic and the purpose and relevance of the study to nursing practice. A summary of the chapter content is included along with a brief overview of the topics of lung cancer, smoking, and lung surgery. In Chapter 2, the literature is reviewed and the terms and concepts of treatment and recovery are defined. Current management strategies and research findings from nursing and healthcare literature are analysed. Literature and stories about personal experiences and patient perspectives are also reviewed. Chapter 3 describes the theoretical perspective that informs the study. Different phenomenological approaches are examined and the rationale for the use of van Manen s approach in this study is discussed. The method used in this study is described, taking into account the selection process and demograhic details of participants. The display and reduction of the interview data for analysis is described and the process of data analysis presented. This is followed by a reflection on the research process, the interaction between the investigator and participants, and the tension between the investigator and data. Chapter 4 presents and discusses the themes arising from the transcripts of participant stories. It is divided into six sections with each section describing and discussing how a particular theme relates to the notion of living with one lung, or life after a pneumonectomy. Relevant literature supports in-depth discussions. Section 1, Living the discomforts of 4

13 treatment and recovery addresses the physical and emotional discomforts experienced by participants as they recovered from their surgery. Section 2, Discovering new limitations on my self: functional and emotional identifies the physical and emotional symptoms that manifested into limitations, and discusses the negative impact of these limitations on the quality of life and lifestyle of participants. Section 3, My reliance on support discusses how participants acknowledged their need for support, and identifies the sources from which they gained support in order to sustain their recovery. Section 4, My financial security is threatened addresses return to work issues and the consequence of not returning to work on the quality of life and lifestyle of participants. Section 5, My survival is at threat, related the issues arising from a diagnosis of lung cancer, having treatment and then living life with one lung to an ever present fear of the cancer returning. Section 6, I wish I had known more is the final theme. It identified that nobody (patients or professionals) really understood what it is like to recover from pneumonectomy, and consequently, their not knowing contributed to some of the clinical and psychological problems that participants experienced. The final chapter draws together the findings and discussions from the study and presents the conclusions. Limitations of this study and the implications of this study for patients and health professionals are identified. Recommendations for nursing research, practice, and education are identified and discussed. To be compatible with the theoretical perspective of the interpretive paradigm a first person approach has been used rather than the third person, and the active voice rather than the passive has been used in writing where relevant beginning in this chapter and continuing through subsequent chapters (Webb, 1992). Pseudonyms are used to identify the voices and actions of the study participants as their voices are presented in print form. 1.4 Background information Lung Cancer, Smoking, and Historical Background to Lung Surgery and Pneumonectomy In preparing for this study my reading led to an abundance of historical information about lung cancer, lung surgery and tobacco use. There is unquestionable evidence that these three topics are inter-related and so for this reason an overview of each of these topics has been included in this introduction. The historical information provides evidence of the relevance 5

14 of this study to the 21 st century because tobacco use is a voluntary behavioral activity and has been proven to cause lung cancer. Therefore, lung surgery to treat lung cancer is potentially a preventable operation. Prior to the 20 th century, in the western world, lung cancer was rare, smoking rates were low, and lung surgery was an uncommon operation Lung Cancer According to the notes of Brewer (1982), lung cancer was known as far back as the 16th century and the acquisition of information about lung cancer took place over two notable time periods. The first period was between the years 1521 and 1850, when lung cancer was describes as encephaloid and cerebriform because the tumours or masses resembled brain tissue. An autopsy report of 1805 used this terminology. The root of the left lung was found to be occupied by a mass which resembled brain The liver contained numerous cerebriform masses (Bayle cited in Brewer 1982, 650). The term cerebriform was changed to cancer du pomon around 1839, then in 1851 the first case of lung cancer in the USA was reported (Brewer, 1982). The second notable period was between 1857 and the 1900s when cellular pathological studies by a number of scientists reported a variety of significant findings that contributed to information about how lung cancer behaved. Pulmonary veins (as opposed to the arteries) were found to contain tumour cell thrombi. The microscope identified cancer cells, tumour cell tissue was found in sputum, cancer cells were found in pleural fluid, and needle aspiration was found to be a positive diagnostic method (Brewer, 1982). Brewer (1982) also highlighted a number of other important discoveries that are common to lung cancer behaviour and accordingly are part of the knowledge base that drives clinical practice today. In 1838, the now classical symptoms of a superior sulcus tumour were accurately reported. The ability of the disease to metastasize was reported in 1841, with cerebral metastases being reported as a common complication of lung cancer in The classical signs of an obstructed bronchus (pneumonia or pleurisy) were reported in 1842, while the effects of superior vena cava compression (facial swelling, distended superficial veins and dysphagia) was reported in Later came reports of epithelial proliferation within the lung tissue and the lymphatic system. Finally, the development of radiography based on the discovery of the roentgen ray in 1895, and the introduction of bronchoscopy in 6

15 1897 assisted the process of achieving a clinical diagnosis. All of these findings have become mainstay features of the clinical manifestation and diagnosis of lung cancer today. Weller (1956, cited in Brewer, 1982) reported a number of irritant substances that contributed to lung cancer. Lung cancer was initially described as far back as 1898 as an endemic occupational disease. This was the case for miners of Saxony and Bohemia who inhaled dust from corrosive minerals. In 1921 exposure to radium along with other irritants such as cobalt, nickel, arsenic and exhaust hydrocarbons were reported as a cause of lung cancer. Some time later, lung cancer was known to develop in patients with asbestosis but an interest in cigarette smoking as a cause of lung cancer only began in the 1950s. This interest was aroused in 1952 with the landmark publication of Doll and Hill that showed the strong statistical relation between cigarette smoking and lung cancer (Brewer 1982, ). It is well recognized today, that cigarette smoking causes lung cancer and that lung cancer is a major cause of premature deaths. The real impact of the problem of lung cancer, however, is found in the lung cancer data recently published by Goumas, O Connell, Smith and Armstrong (2001). Goumas et al. (2001) reported that in NSW, Australia, in 1998, lung cancer was the third most common cancer and the leading cause of cancer deaths. In that same year there were 2,724 new cases of lung cancer diagnosed, of whom 1,870 were males and 854 were females. There were 2,236 deaths due to lung cancer, being made up of 1,540 males and 696 females. Incidence rates in 1998 suggested that 1 in 19 males and 1 in 45 females could expect to develop lung cancer by the age of 75 years. Their data also reported that between 1973 and 1998 the incidence of lung cancer decreased in males in all age groups below 75 years but increased in females in all age groups. Survival figures reported that for lung cancers diagnosed between 1980 and 1998 the chance of long term survival was abysmal. The relative survival rates of males and females reduced rapidly in the first year after diagnosis to a point where the five-year relative survival rate was 11% in males and 14% in females (Goumas et al., 2001). Primary lung cancers have two major clinical classifications: small cell lung cancer (SCLC) and non-small cell lung cancer (NSCLC). SCLC is highly malignant, arises from neuroendocrine cells, and is not treated by surgery. Primary NSCLCs are grouped according to their cellular origin and are treated by surgical resection if a cure is intended. Squamous cell 7

16 carcinoma (SCC) arises from bronchial surface cells, adenocarcinoma arises from glandular cells and large cell carcinoma describes a tumour that has no specific cytological characteristics of either SCC or adenocarcinoma. Primary lung cancers are classified according to the American Joint Committee for Cancer Staging system using a TNM (Tumour, Node, and Metastasis) classification. A detailed description of this classification in relation to lung cancer appears in APPENDIX F. According to this classification, Stage 1A and 1B, and Stage 2A and 2B NSCLCs are tumours confined to the lung or bronchial tree, with an absence of or limited lymph node involvement and no extra-thoracic disease. These tumours are ideally treated by surgical resection with the intent to cure the disease. Stage 3A NSCLCs are sometimes treated with surgery if the tumour has shown a good response to a course of pre-operative or induction chemotherapy. Stage 3B or stage 4 NSCLCs are not treated by surgery because the staging indicates advanced disease. Other palliative treatment methods (radiotherapy, with or without chemotherapy) are used to control tumour activity and relieve symptomatic discomforts. All participants in this study had either Stage 1 A, 1B, 2A or 2B non-small cell lung cancer. Figures from the Lung Cancer Surgical Database, maintained at University of Sydney, demonstrate that people with Stage 1A, 1B or Stage 2A, 2B NSCLC, treated by a curative surgical resection have a favourable chance of being alive five years after their surgery. The survival figures are given in Table 1. Stage of NSCLC 5 year survival rate in % 1A 67 1B 50 2A 47 2B 34 3A 21 Table 1: Five-year survival figures for NSCLC treated by surgical resection. (Lung Cancer Surgical Database, University of Sydney, NSW, 2002) Smoking Goumas et al. (2001, 5) commented that, Cigarette smoking is the primary risk factor for lung cancer. They based this statement on their knowledge that epidemiological studies 8

17 published in the 1950s and 1960s had established the causal relationship between cigarette smoking and lung cancer. They also acknowledged that ongoing research identified that risks of developing lung cancer are affected by duration of tobacco smoking, tar content in cigarettes, cessation of smoking and passive smoking. Goumas et al. (2001, 3) published an interesting summary of smoking related data: From the 1997 and 1998 NSW Health Surveys 27% of male adults were current smokers compared to 21% of female adults. In Australia smoking prevalence in males has been decreasing for the last 50 years, whereas the prevalence in females has only been decreasing for the last 20 years. Based on smoking trends, lung cancer incidence should continue to decrease in males and begin to decrease in females soon. The decline in mortality for females is thought to be attributed more to a reduction in the tar content of the tobacco than female cessation of smoking. There have been numerous national and international studies looking at the effects of tobacco use on cardiovascular health and lung cancer but a study by Taylor R. (1993) highlighted the potential problem of continued use of tobacco by young people. The study, a cross sectional actuarial analysis of 1990 mortality data produced information that estimated how many 15-year-old smokers who were in the 1990 population would have a premature death (from all causes) that could be directly attributed to tobacco use. A summary of the analysis produced the following absolute risk data: From one year of 15-year-old male smokers (26,713), 3,916 premature deaths due to tobacco can be expected; this includes 1,106 lung cancer deaths, 991 ischaemic heart disease deaths From one year of 15-year-old female smokers (32,355), 3,861 premature deaths due to tobacco can be expected; this includes 1,086 lung cancer deaths, 559 ischaemic heart disease deaths (Taylor R. 1993, 358). All of these figures highlight the fact that lung cancer, along with the other tobacco-related illnesses such as ischaemic heart disease, stroke and chronic bronchitis, is one of the most avoidable forms of ill health in our community (CSAHS 1999, Foreword). There is an 9

18 increasing awareness that tobacco-related lung cancer treatment has a high-cost, low-cure rate. The need to address the problem of tobacco-related illnesses through primary prevention strategies was embraced by Australia when a Health for All Australians report was released in 1988 (CSAHS Tobacco Control Plan 1995, 4). This report led to the first set of national goals and targets for Australia, from which the NSW Goals and Targets Priorities for 1995/96 (CSAHS Tobacco Control Plan, 1995) was formulated. From this point on, much work has been done both nationally and locally to implement strategies aimed at reducing tobacco-related illnesses, of which lung cancer is the major problem. The health problem of lung cancer is gaining public attention with increasing efforts being made to warn smokers of the dangers of their habit. Programs and medications aimed at helping people to quit smoking are more readily available and accessible. There is also a drive within the medical profession to develop best practice guidelines for the management of lung cancer as a result of a Lung Cancer Workshop hosted by The Cancer Council, New South Wales, in December Thoracic surgeons and physicians have recognized the fact that smokers are more likely than other people to develop lung cancer. This is demonstrated in their practice today when they support the view of Brewer (1984, 655) that the most important question that a clinician can ask a potential cancer patient is, do you smoke and for how long? Historical background to lung surgery and pneumonectomy In their writings, Graham and Singer (1933), Nissen (1980), Brewer (1981 and 1984), Baue (1984), and Scannell (1986) provide a fascinating account of the difficulties and challenges that surgeons have encountered while trying to perfect pulmonary resections. There were a number of attempts at surgical resection of lung cancer reported: two were in Munich in 1920 and 1926, two were in England, one in Detroit, and there were several others. Consequently, there were a number of opinions about what technique constituted a pulmonary resection and how to perform the operation (Baue, 1984). The process of developing successful lung surgery techniques took place over many years. Brewer (1984) identified that there were four distinct eras of development. The first was the 10

19 period of fortuitous pulmonary resection between 1496 and 1895 when the chest was safely opened without intra-tracheal anesthesia, and several other barbaric procedures were performed to remove necrotic lung tissue. The second period was one of animal experimentation between 1880 and 1900, which involved some successful experimental lung resections in Los Angeles and Chicago. The third period was the beginning of the modern period of , when intra-tracheal anaesthesia was introduced to counteract the forces of open pneumothorax while the chest was opened. The final period, being the present-day period, started from 1928 with a reporting of six pulmonary lobectomies being performed with only one death. Lobectomy became a successful operation. Pneumonectomy was yet to be mastered. There were a number of surgeons striving to find the correct surgical technique to treat noncancer conditions such as tuberculosis, bronchiectasis, and lung abscesses in the early present-day era. Richard Overholt, one of these notable surgeons, worked with a team of doctors developing a 2-stage technique to drain lung abscesses using an intercostal tube. By 1933 Overholt had performed three successful pulmonary lobectomies. He had performed a single stage complete lung resection (pneumonectomy) but the patient had died 29 days later. Overholt made the significant observation while performing lung surgery that smokers had darker, stiffer, and less easy to deflate lungs than non-smokers who had a smoother and quicker convalescence from the surgery. Despite scepticism and ridicule from medical colleagues he persisted with his comments on his findings and embarked on a plan to educate, warn, and convince people about the dangers of smoking (Berger, Dunton, Ashraf, Leonardi, Karlson and Neptune, 1992). In Berlin in July 1931, Rudolf Nissen performed a two-stage pneumonectomy in a 12-yearold child with empyema after a crush injury to her chest. Prior to this, no surgeon had tackled the challenge of removing a complete lung, not because of problems related to technique but because they did not know what to do with the empty space once the lung was removed. Cameron Haight of Ann Arbor (USA) performed a similar two-stage procedure in 1932 on a 13-year-old girl with bronchiectasis. They both used a technique whereby the left chest was opened, and the upper and lower lobes were separately ligated then allowed to slough away (Nissen, 1980). There was much excitement about this feat but in 1933, Evarts A. Graham performed a successful one-stage pneumonectomy in a patient with lung cancer. This was the first one-stage pneumonectomy. 11

20 The operation took place in Barnes Hospital, USA on April 5 th on a patient who was a 48- year-old physician (Graham and Singer, 1933). Graham and his team set out to perform an upper lobectomy but once the operation had commenced and the chest was opened the clinical situation led to a decision to remove the complete lung. The patient recovered and continued to practise medicine for 24 years, then died some 30 years after having his lung removed. Ironically, he showed no signs of cancer recurrence, while the great and talented Dr Graham died in 1955 from lung cancer, 22 years after performing the historic surgery (Brewer, 1984). The following report by Graham, published in The Cancer Bulletin (1949, cited in Brewer 1984, ), provides an eloquent description of events leading to the completion of the historic first pneumonectomy. At the operation, however, it was possible to palpate the tumor; and I discovered that apparently it extended down into the bronchus of the lower lobe. It seemed certain, therefore, that the removal of only the upper lobe would not result in removal of all of the cancer. Moreover, a lobectomy presented some technical difficulties, because there was almost a complete absence of an interlobar fissure. It occurred to me at once, therefore, that the only kind of operation that might offer a chance of cure would be total removal of the left lung. The patient brought with him a physician friend who was in the operating room gallery during the operation. I told that it would be useless to perform a lobectomy and that I strongly advised removal of the lung. I asked for his opinion; it was not very helpful. He asked if such an operation had been done before. I replied, No. I pointed out that the operation had been performed successfully in animals, but that I knew of no case in the human being of a successful one-stage removal of the lung. After a little more discussion, and particularly because I was certain the patient would want me to take any changes that might effect a cure, I decided to go ahead with the total pneumonectomy. There was one aspect of the operation which worried me. It was whether or not a middle-aged patient could tolerate the sudden occlusion of the pulmonary artery to a lung. The artery was ligated separately with heavy catgut. I was horrified to see the enormous space left after the removal of the lung, and it seemed necessary for me to diminish the size of the space by the removal of ribs. Accordingly, I removed seven ribs, from the fourth to the tenth inclusive. 12

21 Evarts Graham had a desire and even a passion for surgeons to help their fellow man. After his first one-stage pneumonectomy, the technique became accepted around the world as a correct procedure for bronchiogenic carcinoma where lobectomy would not provide complete clearance of the tumour. Graham proved that for early lung cancers there was a 30% chance of being alive and free of disease five years later (Brewer, 1984). For lung cancers with regional lymph gland involvement the chance was diminished to about 15 %. He also reported a 7% mortality rate from his 101 cases. Graham (cited in Brewer 1984) commented that, No other treatment up to the present time can offer a patient any hope at all (823). Survival figures have improved considerably since Grahams time (refer to Table 1 for modern figures), thanks to early detection of lung cancer, more accessible diagnostic procedures, and improved surgical techniques and post-operative care. The mortality figures of Graham were favourable (7%) given that data from the Lung Cancer Surgical Database at then University of Sydney report an overall mortality rate for pneumonectomy as 3.59%. In reading Graham s account I was reminded that the intention of this operation has not changed. The intention has always been to cure the patient of lung cancer. Lobectomy is performed when the tumour is confined to the lobe of the lung and there is no evidence of disease in the lymph nodes or any structures outside of the chest. Pneumonectomy is performed when a tumour is located in the main bronchus, or when a tumour is bulky and situated near the hilum in the chest and it involves major mediastinal thoracic structures, and/or when mediastinal lymph nodes are involved or are contiguous with tumour or lung tissue. Pneumonectomy is always performed with the intention of removing all macroscopic and microscopic disease. The operation in which Evarts A. Graham successfully removed an entire lung to treat carcinoma of the bronchus showcased the role of surgical pulmonary resection in treating lung cancer. Graham and Singer (1933) commented at that time that the only method that at present can offer any hope is the wide surgical removal of the tumour and the surrounding tissue (257) and in some instances this meant the removal of an entire lung. In 2002, surgical resection remains the gold standard treatment option when a cure is the intention of treatment for lung cancer. This background introduction helps to put into perspective some of the dilemmas that patients might face on hearing that they have lung cancer. On one hand they face imminent 13

22 death if their disease is incurable or their body will not tolerate an operation. On the other hand they face major surgery and a chance that they will lose a complete lung, but in the background there is the knowledge that smoking may have contributed to a diagnosis of lung cancer. The real issues that patients are confronted with when they face, experience, and recover from lung cancer surgery will be illuminated by this study. 14

23 CHAPTER 2 LITERATURE REVIEW 2.1 Introduction This chapter introduces definitions of the terms and concepts of treatment and recovery as they appear in the title and body of this study. They have been included because an understanding of the context in which these words are used in this study is vital to the interpretation of the study s findings and ongoing discussions. Following this is a description of the method used for the literature search and a review of the findings of the literature as they relate to recovery following pneumonectomy. Healthy individuals take their bodies and minds for granted when they freely function without signs and symptoms of disease or illness in their normal world. They know, however, that when they feel unwell, and symptoms suggest that something is not right with the health of their body they should visit or consult their family doctor or general practitioner (GP). When this situation arises and they visit their GP, a course of action takes place. The action begins with the doctor making a clinical assessment of the state of health of the individual and performs and or orders diagnostic tests to assist making the diagnosis. Once a diagnosis is made, a treatment is recommended. The person undergoes the treatment until such time as the prescribed treatment is complete with an expectation that their symptom(s) will abate and they will make a compete recovery. Unfortunately, not all people who become ill experience such a simple course of consultation, diagnosis, and treatment followed by recovery. When an individual receives a diagnosis of lung cancer, they realize that they have a critical life-threatening disease. They seek out a treatment for their disease, always hoping that the treatment will cure the disease. They expect and hope that the treatment will enable them to achieve a recovery that will return them to normal health. 2.2 Treatment The Macquarie Essential Dictionary (1999, 861) says treat means to deal with (a disease, patient, etc) in order to relieve or cure and treatment is the act or manner of treating. The Microsoft Word Thesaurus says treatment means handling, processing and therapy. The word therapy has a health connotation in that its synonyms are prescription, care, 15

24 mediation, regimen and doctoring. I could not find any definition of treatment in textbooks about health, illness and disease (Kleinman, 1988; Bergsma, 1997; Couser, 1997; and Salmon, 2000), but the word is in common use in health and everyday life, and its use encompasses all of the meanings mentioned above. These meanings imply that there is communication between a patient and health professional(s), whereby the health professional prescribes a therapy. If the patient accepts the offer of therapy, then someone delivers it and takes care of the patient. The therapy can be in the form of a single application, a specified course, or a set regimen of action. In chronic illness, the use of the word treatment implies that a patient is or will be receiving a therapeutic action, and with it come numerous consequences, some of which are made obvious by the questions that patient s ask themselves such as, What treatment do I wish to receive? What do I expect from the treatment? What effects of the treatment do I fear? (Kleinman 1988, 44). Bergsma (1997), in a text exploring the problematic triangle between doctors, patients and illness, implied that a treatment is a physical therapy when he mentioned objective findings in diagnostic or treatment procedures (85). Couser (1997, 10) on the other hand sees treatment as a complete package of therapy that involves interaction between the patient and doctor. He talked about The treatment of illness collaboration between doctor and patient and says that Diagnosis leads in turn to prescription, treatment, and prognosis. He implies that treatment is the sum of a number of distinct processes. Salmon (2000) reinforced the difficulty in defining treatment in his text. Six chapters were grouped under the heading of treatment but no definition for the term/word was given. The text did, however, discuss the many issues that fall under the umbrella of the word treatment and highlighted that treatment is a complex process. The author referred to treatment as a bringing together of an expert professional with the inexpert patient to diagnose and manage a health problem. The process is complex because it involves decision making by the clinician and the patient, empowerment, choice, control, information, communication, hospitalization and surgery, patient adherence, management of unexplained physical symptoms, recognizing and managing psychological conditions related to physical disease, and finally evaluating patient outcomes and care (Salmon, 2000). All of these issues are encompassed by the term treatment. 16

25 As can be seen, there is no simple meaning for the word treatment. In the clinical setting, treatment generally relates to either a single episode or a series of episodes of dealing with a person or thing. The dealings involve the delivery of a therapy, a prescription, and/or some form of care. It also involves mediation, a regimen or doctoring (Microsoft Word Thesaurus). Treatment is a dealing or communication that takes place between a health professional and a patient where some form of therapeutic advice or action takes place. In the case of lung cancer, the surgeon offers the best treatment, which is surgery providing the tumour can be safely removed. Patients can choose their treatment and do choose their treatment following discussion with the surgeon who usually says something such as, The various medical and surgical treatments available for lung cancer are (Pierce 1990, 22). Clinical examples of supportive therapy that are labeled treatment are many and varied. Post-operative pain management is a treatment that nursing and medical staff deliver to patients while they recover from their surgery in hospital. The family doctor or GP takes over treating the pain once the patient is discharged from hospital. Nurses provide treatment and care when they help patients with personal hygiene and mobilization. They also provide general care when they perform activities that help patients achieve a level of comfort. Physiotherapists perform treatments such as teaching and assisting deep breathing and coughing exercises and carrying out chest percussion on patients aimed at preventing them from developing post-operative respiratory complications. Doctors prescribe medications that are called treatments, delivered to patients by nursing staff such as establishing and running a blood transfusion and administering intravenous antibiotics. Hospital medical teams perform doctoring when they assess the patient s clinical progress at least daily and adjust prescribed treatments accordingly. Making appropriate adjustments to treatment is dependent on continuing communication or mediation between the patient, and nursing, allied and medical staff. For the participants in this study, their treatment began at the time of their diagnosis, but more specifically the surgical aspect of their treatment began at the time of their consultation with the surgeon. It was at this visit that the surgeon made the clinical judgement that surgery was possible and offered the best chance of a cure. The offering of the surgery as a treatment option and the acceptance of the offer by the patient marked the real beginning of their surgical treatment. The treatment episode was expected to span a period of up to two months and culminate in recovery. 17

26 Treatment refers not just to the main event of having a pneumonectomy. It encompasses all of the professional, physical and emotional interactions (or dealings) that take place between a patient and their family, and health professionals during a period of time. It began with the diagnosis and was expected to end when they, the patient, felt they had recovered from the surgery. 2.3 Recovery Arthur Frank (1991, 2) says, Illness is something to recover from if you can and A problem with the view of recovery as the ideal ending of illness is that some people do not recover. The Macquarie Essential Dictionary says to recover is to regain health after sickness, etc. to regain the strength, balance etc. of oneself (1999, 660). There are a number of unanswered questions about recovery such as how do patients know when they have recovered? What is considered a normal recovery for patients who have had a lung removed to treat lung cancer? Is it realistic to expect patients to return to a normal state of health? These questions are raised in an environment where Frank (1991) believes that not all patients recover from illness. Recovery can be viewed from two perspectives. One is an objective perspective where a physical recovery takes place and there is a definite end point of the illness event. The other is a psychological perspective from which recovery is viewed more as a process of being a survivor of a disease and there is no real endpoint. Frank (1991) highlights these two perspectives when he writes about his own experiences of a heart attack and cancer. He said, Recovery has different meanings. After my heart attack it meant putting the whole experience behind me. I wanted to return to a place in the healthy mainstream as if nothing had happened. Cancer does not allow that version of recovery. I am reminded, every time I see a doctor or fill out an insurance form, that there is no cure for cancer, only remission (Frank 1991, 2). For Frank, an angiogram signified an end to an incident and it closed the book on his heart problem, whereas his cancer treatment left him with an ongoing experience. While both of these examples had a physical or objective component, the heart attack experience had a definite end but his cancer experience had no end. In the setting of surgery, there is an expectation that a patient will reach a point where they can say that they have recovered. For the patient who has had a complete lung removed, knowing what or how to feel when they have reached that point called recovery is yet to be documented. 18